July 8, 2021:

Big Ten Cancer Research Consortium investigators are determined to give adolescents and young adults (AYA) a fair shot in overcoming cancer by addressing the systemic challenges that are often roadblocks to the best care, including access to cancer clinical trials.

AYAs range in age between 15 to 39. According to the National Cancer Institute, an estimated 88,260 new cases of cancer will be diagnosed among AYAs and about 85% of AYAs diagnosed with cancer will survive their cancer beyond five years after their diagnosis, some left with chronic side effects and fertility issues.

Incidence of cancer occurs significantly more often in AYAs than younger children. Between 2011-2015, according to data reported by the NCI Surveillance, Epidemiology, and End Results (SEER) program, there were:

  • 16 cancer diagnoses per 100,000 children ages 0 to 14 years
  • 72 cancer diagnoses per 100,000 adolescents and young adults ages 15 to 39 years
  • 953 cancer diagnoses per 100,000 adults ages 40 and older

Some of the most common cancers among AYAs are breast cancer, testicular cancer, melanoma, and thyroid cancer.

David Dickens, MD, FAAP, a hematologist-oncologist at the University of Iowa Stead Family Children’s Hospital, is working alongside Amanda Parkes, MD, a medical oncologist specializing in sarcoma and breast cancer at the University of Wisconsin Carbone Cancer Center, to address barriers often faced by this age group as co-chairs of Big Ten CRC’s newly formed Adolescent and Young Adult Clinical Trial Working Group.

“When patients enter a lot of these big health systems, if you’re older than 18, you’d automatically go to the adult side,” said Dr. Dickens, the UI Dance Marathon Chair in Pediatric Oncology at the Carver College of Medicine. “The question is, when you present in this age group, how do you get them the best treatment possible?”

Dr. Dickens explains there can be a lack of awareness and familiarity with clinical trials implemented by both adult and pediatric cooperative research groups which aim to care for the same AYA patient population.

“My approach is to identify barriers and address them in a way that advocates for the patient to ensure they get access to the best treatment available,” he said.

Dr. Dickens says discussions are happening more frequently between adult and pediatric care teams at University of Iowa Hospitals and Clinics and he’d like to see the same approach applied to discussions about clinical trials.

“We can start the dialogue by asking investigators, what is your age limit for clinical trial enrollment normally,” Dr. Dickens said, and then ask about lower age of enrollment. “Why is it 18? Why is it 21? Can it be 12? There are FDA guidance documents that suggest that you can take that lower age limit, which historically has been 18 to 21, and bring it down to 12 or about 90 pounds. Evidence suggests that this would safe and appropriate. The message we want to convey is for cancer researchers to look at every study and ask which studies are inclusive of the AYA population, and then promote and prioritize them within each institution.”

In the United States, AYAs with cancer have the lowest participation rate in clinical trials of all age groups and they have the lowest proportion of specimens available for laboratory and translational research, according to an article published in the April 2018 issue of Wiley’s Pediatric Blood & Cancer.

“I think every institution has to eventually commit to the concepts of diversity, equity, and inclusion, and so far in cancer research, age has shown disparity in progress,” Dr. Dickens said. “The chance of curing a patient within the AYA age group is the same as it was decades ago. The best way to make the fastest progress is to have as many patients enrolled in a clinical trial as possible.”

Dr. Parkes, who also co-chairs Big Ten CRC’s Sarcoma Clinical Trial Working Group, said she would like the AYA Clinical Trial Working Group to assess access to care based on geographic location.

“I want to make sure we’re supporting these young people appropriately, that they’re getting the same quality of care as we would give a younger or an older patient and that they have the same access to clinical trials — no matter where they live,” she said. “They all want to have good data to support treatment options and have their provider help them interpret data and sift through treatment considerations.”

For Dr. Dickens, treating AYA oncology is important for many reasons. He recognizes the treatment gaps, reduced outcomes, and mortality rates. Fertility and long-term side effects that affect quality of life are also concerns for the AYA population, Dr. Dickens said.

“Cancer is the leading cause of death due to any disease in college-age kids,” Dr. Dickens emphasized. “In the evolution of cancer therapy, there’s been a trend toward improving outcomes. We’re seeing it in every single age group over time, except one. And that age group is the adolescent and young adult group. Something needs to be done.”

Dr. Dickens believes the Big Ten CRC is in a good position to make a difference for this age group.

“Big Ten cancer centers have the ability to overcome the pressure that a lot of investigators may feel to do independent, proprietary research to remain competitive. We have a more important mission than demonstrating one institution has something special, and that mission is finding cures!”

Dr. Parkes also sees the potential impact AYA investigators can have through collaborative research.

“The AYA working group is really critical,” Dr. Parkes said. “We can help ensure that consideration of AYAs is included in clinical trials, that we are discussing clinical trials with our AYA patients, and that AYAs are considered in our inclusion criteria of protocols at an earlier stage.”

For Dr. Dickens, the role he has taken on as a co-chair is not just a title; it is a call to action.

“Everybody’s stated mission is to cure people with cancer. Anything that stands in the way is a barrier,” he said. “Having been in the field for this long, I’m very mission-driven, and I intently and fiercely pursue this most important goal, which is curing more, curing better. Until the day comes where you can have a cancer diagnosis and be told that it will be okay, our work isn’t done.”

About the Big Ten Cancer Research Consortium: The Big Ten Cancer Research Consortium was created in 2013 to transform the conduct of cancer research through collaborative, hypothesis-driven, highly translational oncology trials that leverage the scientific and clinical expertise of Big Ten universities. The goal of the Big Ten Cancer Research Consortium is to create a unique team-research culture to drive science rapidly from ideas to new approaches to cancer treatment. Within this innovative environment, today’s research leaders collaborate with and mentor the research leaders of tomorrow with the unified goal of improving the lives of all patients with cancer.

About the Big Ten Conference: The Big Ten Conference is an association of world-class universities whose member institutions share a common mission of research, graduate, professional and undergraduate teaching and public service. Founded in 1896, the Big Ten has sustained a comprehensive set of shared practices and policies that enforce the priority of academics in the lives of students competing in intercollegiate athletics and emphasize the values of integrity, fairness and competitiveness. The broad-based programs of the 14 Big Ten institutions will provide over $200 million in direct financial support to more than 9,800 students for more than 11,000 participation opportunities on 350 teams in 42 different sports. The Big Ten sponsors 28 official conference sports, 14 for men and 14 for women, including the addition of men’s ice hockey and men’s and women’s lacrosse since 2013. For more information, visit www.bigten.org.